A major research initiative led by University of Leeds is set to examine the long-term impact of rare blood disorders diagnosed during childhood, with a focus on improving patient outcomes and reducing health inequalities.
The Haematology Lived Experience and Outcomes (HALO) study will analyse the effects of Sickle Cell Disease, Beta Thalassemia and Acute Leukaemia by linking national health records across England and conducting patient surveys.
Researchers said the study aims to better understand how these conditions affect individuals into adulthood, including their health, education and employment outcomes. In the UK, around 17,500 people live with sickle cell disease, while about 1,100 people are affected by beta thalassemia.
Both sickle cell disease and beta thalassemia impact red blood cells, causing anaemia, fatigue and reduced oxygen supply. Sickle cell disease may also lead to severe pain, stroke and infections, while beta thalassemia is associated with poor growth and chronic fatigue. Acute leukaemias, which affect white blood cells, are typically treated with chemotherapy or bone marrow transplants.
The study is supported by a £680,000 grant from Leeds Hospitals Charity and is being conducted in partnership with Leeds Teaching Hospitals NHS Trust under the Child Health Outcomes Research at Leeds (CHORAL programme).
Professor Richard Feltbower, co-leading the study, said the research will combine patient experiences with national clinical data to provide insights on life expectancy, long-term health risks and socio-economic outcomes.
Patients involved in the study highlighted the need for greater awareness and reduced stigma. Solome Mealin, a sickle cell patient and researcher, said limited familiarity with the condition among healthcare professionals can affect care, while Kabir Hussain, a beta thalassemia patient, stressed the importance of participation in research.
The HALO study will use NHS datasets, clinical registries, and education and social care data. The survey component opened in January 2026, while data linkage began in late 2025.
Researchers said findings from the study could help inform clinical practices and policy decisions, ultimately improving quality of life for people living with rare blood disorders.